What is lupus?

Lupus is a chronic inflammatory autoimmune disease that affects as many as 1.5 million Americans – about 90 percent of them women. While a person of any race can have lupus, it's more prevalent in the African American population.

The immune system normally protects the body against viruses, bacteria, and other harmful substances. But with an autoimmune disease such as lupus, the immune system may also react to your body's own cells.

This can cause inflammation that may affect many different organs, including the skin, kidneys, joints, blood cells, heart, and lungs. Severe inflammation can lead to chronic pain, tissue injuries, and organ damage.

There's no cure for lupus, but a variety of medications and lifestyle changes can ease symptoms and prevent organ damage.

Lupus is a chronic disease that comes and goes but rarely disappears altogether. Most people have mild symptoms punctuated by painful episodes called flares.

During a flare, symptoms can include fatigue, fever, rash, joint pain and swelling, hair loss, sensitivity to light, and weight loss or gain. Eventually the flare subsides and the disease goes into remission. People with lupus may also have chest pain, difficulty breathing, and kidney problems.

Is there more than one kind of lupus?

There are four main types of lupus.

Systemic lupus erythematosus: SLE is the most common and severe form of lupus. It affects the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with flares alternating with remissions.

Discoid lupus erythematosus: This type of lupus mostly affects the skin, with red, inflamed lesions that appear mainly on the face, ears, and scalp. Only about 10 percent of patients with discoid lupus erythematosus develop the multi-organ disease SLE.

Drug-induced lupus erythematosus: DILE (also called DIL) can occur in people who take certain medications, typically drugs used to treat chronic diseases such as hypertension and heart disease. Once the medication is stopped, symptoms usually disappear in a week or two.

Some symptoms of DILE overlap with those of SLE. These include muscle and joint pain and swelling, flu-like symptoms of fatigue and fever, serositis (inflammation around the lungs or heart that causes pain or discomfort), and certain laboratory test abnormalities.

Neonatal lupus erythematosus: This rare condition occurs in 2 percent of babies born to women who have certain autoantibodies, anti-Ro and anti-La. These antibodies can cross the placenta and cause inflammation in the developing baby's skin or heart. The baby usually appears healthy at birth but may develop a rash and abnormal blood counts in the first several weeks of life. The lupus usually disappears by the time the baby is 3 to 6 months old and doesn't recur.

Serious cases of neonatal lupus can cause a problem with the electrical signals of the heart (congenital heart block). This condition is permanent, but it can be treated.

Why is it especially important for black women to know about lupus?

Lupus occurs in about 4 out of 1,000 people in the United States. Black women are three times more likely to have lupus than white women. Most people develop lupus between the ages of 15 and 44, but black women tend to develop the disease at the earlier end of this range. African Americans also tend to have a more severe form of the disease, with more kidney disease, seizures, strokes, and lupus-related deaths.

It's unclear why lupus is more common and severe in black women than in women of other racial groups in the United States, but some studies suggest that genetic predisposition and factors related to socioeconomic status – such as diet and stress level – may play a part.

What causes lupus?

Doctors don't know exactly what causes lupus. Current thinking is that a combination of hormones and environmental elements triggers lupus in people who have a genetic predisposition to the disease.

These are some of the factors that might make you more likely to develop lupus:

Race: Lupus is more common in African Americans, Latinos, and Asians.

Sex: The disease is far more common in women than in men. (In the United States, 90 percent of lupus patients are women.)

Age: Lupus develops in people of all ages, including newborn babies, but it's most likely to show up between the ages of 15 and 44.

Sunlight: In people who are already susceptible to lupus, sun exposure may bring on skin lesions or trigger a flare.

Epstein-Barr virus: Several studies have found a connection between this common virus and lupus. Nearly everyone is infected with Epstein-Barr, which remains dormant in the cells of your immune system unless something activates it. People who have had recurrent episodes of Epstein-Barr seem to have a higher risk for lupus.

Exposure to chemicals: Some studies have shown that exposure to certain chemicals may increase the risk of lupus.

Can I have a successful pregnancy if I have lupus?

The outlook for pregnant women with lupus used to be grim, but with proper medical care, the risks associated with pregnancy can be reduced. Today, many women with lupus are able to deliver a healthy baby.

Research shows that most women with lupus can safely become pregnant and deliver healthy full-term babies. In lupus patients, there's an increased risk of premature delivery and a slightly higher miscarriage rate when compared with healthy women.

Careful planning for pregnancy offers the best chance for a good outcome. Most doctors recommend that women with lupus wait to conceive until the disease has been in remission for at least six months. (This is particularly important for women who have kidney disease.) An obstetrician trained in high-risk pregnancies or a rheumatologist with expertise in this area can help you decide when it's safe for you to become pregnant.

What symptoms should I expect during pregnancy?

Women who wait to conceive until their disease has been in remission for at least six months are less likely to experience a flare during pregnancy, and they may have few or no lupus symptoms.

Women who become pregnant when the disease is active are more likely to have flares during pregnancy.

Flares can occur in any trimester. They can range from mild to severe, with the most common symptoms being arthritis, rashes, and fatigue.

It's important to distinguish between the symptoms of a lupus flare and the normal body changes that occur during pregnancy. Aching joints are common during pregnancy – weight gain plus a lower center of gravity puts new stresses on your body. Although the joint pain could suggest inflammation due to lupus, it may simply be a normal side effect of pregnancy.

Similarly, lupus rashes may appear to get worse during pregnancy, but this is usually because there's more blood flowing to the skin in pregnancy (the "glow" of a pregnant woman).

Many women notice more abundant hair growth during pregnancy, followed by a dramatic period of hair loss after delivery. Although hair loss is a symptom of active lupus, this shedding is most likely a result of the hormonal changes that happen during pregnancy.

What are the risks of lupus to me and my baby during pregnancy?

Pregnant women with lupus are at risk for certain complications. The risk drops dramatically, though, if you wait to conceive until your disease has been in remission for at least six months. By contrast, if your lupus is active when you conceive or you have a severe flare during pregnancy, you're more likely to have the following complications.

Preeclampsia: About 13 percent of women with lupus have protein in their urine and high blood pressure. This serious condition is known as preeclampsia and requires immediate treatment that may include delivery of the baby.

Preeclampsia affects 3 to 8 percent of pregnant women, and it's even more common among African Americans. Women with lupus-related kidney problems, known as lupus nephritis, are at a greater risk for preeclampsia.

Pregnancy loss: About 25 percent of lupus pregnancies end in a miscarriage or stillbirth.In the general population, about 10 to 20 percent of known pregnancies end in miscarriage.

Premature birth: About 25 percent of babies born to mothers with lupus are premature. Both the disease and some of the medications commonly used to treat lupus can cause a baby to be born early.

There are a number of complications that are more likely in premature babies. Late preterm babies generally have mild problems, if any. Babies born before about 32 to 34 weeks gestation may have a number of complications, ranging from mild to severe.

Fetal growth impairment: Babies of mothers with lupus have a higher risk for intrauterine growth restriction (IUGR), meaning that the baby is much smaller than normal. A doctor can diagnose a fetus with IUGR through a sonogram. IUGR can be diagnosed after birth, but it's better to make the diagnosis prior to birth.

IUGR occurs in about 15 percent of lupus pregnancies. It may be more likely if the mother has preeclampsia or was treated with steroids or other immunosuppressive medications during pregnancy.

Some women with lupus have antibodies that cause blood clots in the placenta. These clots prevent the placenta from growing and functioning normally. Since babies receive vital nourishment through the placenta, this condition can slow your baby's growth.

Your doctor can advise you of the various treatments available. If you're at or near term, you may need to deliver early.

If I have lupus will my baby also have lupus?

About 5 percent of children born to a parent with lupus develop the disease. Most experts agree that genes play a role in the development of lupus but that it doesn't appear without a trigger such as an infection.

About 2 percent of women who have anti-Ro and anti-La antibodies will have a baby with neonatal lupus. This condition consists of a rash and a low blood platelet count that goes away when the baby is between 3 and 6 months old. A child with neonatal lupus is very unlikely to develop systemic lupus erythematosus (SLE) later in life.

In some cases, there may be a problem with the baby's heart. This condition is permanent but treatable, usually with a pacemaker to regulate the child's heartbeat.

If a mother has had one child with neonatal lupus, there's about a 25 percent chance that she'll have another child with the same condition.

How is lupus managed during pregnancy?

Many lupus pregnancies are considered high risk, so your healthcare provider will likely co-man­age your care with a high-risk pregnancy specialist.

Because moms-to-be with lupus need close monitoring, more frequent prenatal visits are often needed, especially if flares occur. You'll probably also have more testing to monitor your baby's growth and be advised to deliver at a hospital that has the staffing and equipment to care for premature babies.

At your prenatal appointments, testing may include the following:

Blood tests to look for specific antibodies that help track the severity of the disease.

Blood pressure tests to check for signs of pregnancy-induced hypertension.

Urine tests to look for preeclampsia.

Ultrasounds to monitor your baby's growth and to make sure there's adequate blood flow through the umbilical cord, particularly in the third trimester.

Fetal heart monitoring to check your baby's heart rate for signs of heart block. This is generally only done if the mom has anti-Ro and anti-La antibodies.

A nonstress test to find out whether your baby's heart rate changes when he's moving. (This is often done in the latter part of the third trimester.)

A biophysical profile to assess your baby's well-being and whether he's getting enough oxygen in the womb. A biophysical profile consists of an ultrasound and a nonstress test. (This is often done in the latter part of the third trimester.)

Many women can deliver vaginally if they've been carefully monitored and they have no lupus symptoms. However, doctors will probably advise you not to get too attached to the idea of a vaginal delivery without medication.

How should I care for myself while I'm pregnant?

Taking good care of yourself during pregnancy can help prevent flares and boost your odds of having a healthy baby. Here's what you can do:

Get plenty of rest. All pregnant women need lots of sleep, but you'll need even more if you have lupus. Make sure friends and family members respect your need for rest.

Protect yourself from the sun. Ultraviolet light can trigger a flare. You can lower the risk by wearing protective clothing and sunblock when you're outdoors.

Keep all of your prenatal appointments. A woman with lupus needs to be monitored more closely than a typical pregnant woman. It's crucial to make it to all of your prenatal appointments so your caregiver can watch out for lupus-related symptoms.

Eat a well-balanced diet. Fruits, vegetables, and whole grains are part of a healthy diet. If you have high blood pressure, your doctor may advise you to avoid salt. If you need help planning and sticking to a healthy diet, your doctor can refer you to a registered dietitian.

Don't smoke. Smoking raises your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels. (Plus, it's harmful to your growing baby, whether you have lupus or not.)

Can I continue taking my lupus medications when I get pregnant?

If possible, talk to your caregiver before you conceive about the drugs you're taking to manage your condition and whether they'll be safe during pregnancy and breastfeeding.

If you have a mild flare in pregnancy involving only your skin and joints, you can be treated with nonsteroidal anti-inflammatory drugs drugs (NSAIDs) such as ibuprofen. Doctors generally advise against using these medications during pregnancy, but for a person with lupus the risks for the fetus are low enough that they can be taken late in the first trimester and through the end of the second if necessary.

When used in the last trimester of pregnancy, nonsteroidal anti-inflammatory drugs can be toxic to your growing baby.

For more severe flares, most experts agree that corticosteroids can be used cautiously during pregnancy. Corticosteroids can be used externally as an ointment to treat rashes or internally as a pill or an injection. Prednisone is the most commonly prescribed corticosteroid, and it's highly effective at reducing inflammation, relieving muscle pain and fatigue and joint pain, and suppressing the immune system.

Prednisone crosses the placenta in low concentrations. There is a slight increase in risk of cleft palate formation in babies exposed to this medication before 14 weeks. Later in pregnancy, steroids can increase the risk of pregnancy-induced hypertension and diabetes.

Some corticosteroids are used later in pregnancy to hasten lung development in a baby that needs to be delivered prematurely. These cross the placenta in higher concentrations.

Antimalarial drugs can be highly effective in reducing inflammation and skin lesions and in preventing flares. These medications are thought to be safe in pregnancy. Many doctors will recommend that their patients continue antimalarials through pregnancy to prevent flares.

Immunosuppressive medications such as azathioprine and cyclosporine can be used during pregnancy. Other immunosuppressive medications, antimetabolites, and cytotoxic drugs such as thalidomide, methotrexate, mycophenolate, and cyclophosphamide can be harmful to the baby and should be avoided during pregnancy.

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